OK, not much of the light / amusing / crafty variety here - I am comforted that people DO read this blog (not sure 'comforted' is the right word - whatever the word is it is lovely, and thank you). But please feel free to skip this post as it is really more a personal record for me. In an ideal world I will be able to read this again a few months down the line and see improvements in my health. So do skip this post entirely if health issues bore you rigid!
Right - I haven't been online much for the last few days, and things have been bad enough for me to need to record them, as I say hopefully there will be an improvement soon.
On Wednesday I was hoping to go and meet a very lovely friend who was having a holiday of a lifetime, travelling from America to do a whirlwind tour of Britain. She was spending a night in York, which is so close to me that it seemed bonkers not to meet up - she rang me and even offered her room for the night to save me travelling home.
But I had to turn the opportunity down - I am babbling and this is probably all out of chronological order but hey ho.
This is how my world goes at the moment.
Night time - a handful of assorted tablets. Painkillers, tablets to help me sleep (not the actual sleeping tablets - I take those maybe three times a week), tablets aimed at the RA. A warm bed helps but going up stairs to put the electric blanket on, then down, then up again at bedtime is too much so I usually put it on as I climb in.
The 'norm' is to toss and turn for anything, hours sometimes (2am ish) until I manage to nod off. Then the dreams start - every night, dream upon dream - very vivid, very clear, often nonsense, often horrific. More often than not I wake up several times shouting or panicking. It is rare to get a full night's solid sleep.
I still tend to set my alarm, usually for 7.30am - trying to keep some sense of normality. On a good day I can get up and downstairs carefully but Ok. Most mornings I have to plan it in advance - what can I grab to wear, do I need anything from upstairs, is it the sort of day when I will be back in bed soon so should I leave the electric blanket on?
My stairs are twisty and steep, so it's a case of gripping the banister and taking it slowly - I usually throw my clothes for the day downstairs so I have my hands free. Classy eh.
I won't detail the entire day because I KNOW how bad it can be.
It's slow. Very slow - when the pain is bad, as it has been lately, I lie in bed and the tears trickle like some wimpy olden days girly. Someone online described it as 'someone sawing slowly through your bone, and just when you think it HAS to stop it all starts again' - dramatic yes, but it's true. The pain is incredible - my hands, arms, elbows - it's the sort of pain where you cannot specify where it's coming from as everything hurts so much. And it doesn't stop. Tramadol eases it (and zonks me out which is wonderful), but I am only allowed 3 a day. The sheets hurt my hands, I can't roll over in bed, can't get comfortable anywhere. Hot water bottle helps (or the microwave one I use as I can't use a kettle safely) but once it goes cold that's it as I am stuck in bed - do I risk getting up and doing the stairs when I am woozy? Arggghhhh!! I once rang my mum because I was past myself, but then felt really guilty as there's nothing she can do and I know she worries so much about me. She always says ring absolutely anytime just to hear a friendly voice.
Then there is the tiredness. Not just 'tired' but utterly drained, the sort of tired that hits you like a big wall and all you can do is sit or lie down and let it do what it wants. I have ME as well as the fatigue that comes with RA, lucky me.
If I have things I need to do - exciting things like the post office - I tend to do even more sitting than usual. I don't have much energy and am learning to be careful with what little I have. I have to thiunk ahead - if I have a hospital appointment on the Wednesday, is it wise to go out on Tuesday? Planning anything for the Thursday is out of the question. A hospital trip means straight to bed afterwards then a very quiet day - pathetic isn't it, the hospital trip becomes a day out.
So the trip to York - see, I mentioned it for a reason! Travelling on my own to York, with an overnight bag, sleeping in a hotel or travelling back again the same day - the after effects of either would not be good.Wednesday ended up being a tough day and I spent most of it in bed. Physically crap and mentally pissed off.
Tomorrow I have scans on all my joints at hospital - pretty straightforward, but because they will be manhandling my bod I know it will hurt (if not at the time then afterwards) and I know I will be shattered. Buggerit!
That's morte than enough for now - I haven't even started on the bloating and weight gain from the medication / immobility!
Anyone who has this bloody illness has my utmost empathy and sympathy.
5 comments:
I am so sorry you are struggling at the moment. It sounds awful. Its horrible having to chose what you NEED to do rather than getting to chose what you WANT to do. The pain medication is obviously not quite doing the trick. When I first starting dealing with pain I just accepted what I was given and thought that was it - I couldn't get anything better. I assumed the doctors understood how much pain I was in. It has taken 10 years and three different doctors to suggest a combination of painkillers that allow me to sleep and to function ok-ish if I pace mayself properly. With regard to the tramadol do you have the slow release variety? They are much better as you don't have the peaks and troughs of the regular variety, you have a steady release of the drug that keeps you on an even keel throughout the day.
There are all sorts of different pain medications that you can try. If what you have got isn't working - go back to your doctor and tell them you need more help. They can try other things.
Amitriptyline gave me my first full night of sleep in about 7 years when I started taking it, and it helped with the pain levels too.
There are other options too - you just need to keep pushing for what you need, they don't believe you need more pain meds unless you insist.
I hope things get better soon.
*sends extra hot water bottle thingy*
It strikes me that an upstairs microwave would improve matters for you if you have the space and the wherewithal. A timer to switch the electric blanket on for you might help too?
A referral to the pain management clinic, if not already on the cards, needs to be organised.
I'm sorry you didn't get to meet your friend. I do hope she is able to come back to the UK again.
It pains me to see you're still having such a hellish time with your illness, and I hope they will find some way to help you. Good thoughts and love sent your way, girlie.
Even better that an upstairs micro, have you ever tried a plug-in heating pad? After using one for the first time I threw out our ancient, leaky hot water bottle.
Hi, I discovered your blog in the aftermath of 2010 Knit Camp at Stirling. I am so sorry about what you are going through and can only imagine the pain. Zopliclone might help as a referral to your local pain management clinic. If you get the community one they can help with any benefits you might not know about but could do with. The timer on the leccy blanket is a must as well.
Sorry you couldn't get to York to see your friend, have you Skype??
Best wishes.
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